Good morning, Atul.
To kick off our discussion of online health-information sites, let me give you a few examples of what’s happened when my patients have used them.
A psoriasis patient on a drug called Soriatane suddenly took a turn for the worse. Was he sick? (Infections can cause the disease to flare up.) Under stress? No, answered my patient casually. He’d discontinued his medicine after reading on the Web that Soriatane patients should avoid the sun. “I plan to spend lots of time at the beach this summer,” he explained. It’s true, I replied, that the medicine makes you more sensitive to the sun. But the sun is also a good treatment for psoriasis. In fact, the combination of sun and Soriatane is ideal–you just have to be careful not to burn.
Another of my Internet-savvy patients was scheduled to have a skin cancer removed in the office but never showed up. When I called, she informed me that she had an appointment with another doctor for Mohs micrographic surgery. “It’s a more precise procedure,” she explained, “and decreases the chance of recurrence.” Yes, you’re right, I said, but your cancer is extremely low risk; there’s no reason to put you through an extensive procedure like that. She wouldn’t be persuaded. She’d retrieved the information on the World Wide Web, she said solemnly, as if it were the final word on the subject.
I have to admit that occasionally I lose my cool at such times–at least until I think back to my own experience as a patient and sympathize with that basic need (and perhaps right) to find out what’s wrong with you and play an active role in decisions about your care. A few years ago, I was diagnosed with a life-threatening condition and eventually underwent a bone-marrow transplant. I remember how scared I was, not being familiar with PNH (a disease of marrow failure) or its treatment options; it wasn’t my field. I felt powerless and passive, deserted not only by my body but also by my mind and reasoning ability. To regain a sense of control over my fate, I went to the medical school library and read up on my disease. I became more informed and was able to ask my doctor better questions. I can’t tell you how important that was for my psyche.
And yet five years ago, when this happened, an ordinary patient wouldn’t be able to do that. Fortunately that’s no longer the case. Today the layperson can not only access the same information on the Internet but can do so more easily and in many cases faster than I once did. What a remarkable fact, one that is bound to have a profound impact on the practice of medicine! And why not? Why should patients be kept in the dark? Why shouldn’t they have the same data at their disposal that doctors do? It may well prove to have a positive impact on their health.
Moreover, this doesn’t have to be considered a one-way street, a matter of simply bolstering a vulnerable patient’s self-confidence. I believe a more informed patient can be extremely helpful to his or her physician. As we all know, the time patients spend with their doctors is all too brief, and becoming more so every day. This often results in doctors’ not remembering to mention certain things and patients’ forgetting to ask questions. Being able to supplement a doctor’s visit with accurate information on the Internet would be good for both parties.
But, of course, there’s a rub. With more than 17,000 unregulated health sites on the Internet, there’s a lot of bad advice going around. In addition, while information may be technically correct, how it is put forth or what is missing from a particular discussion may easily lead to misinterpretation; that is what probably happened in the case of my psoriatic and skin cancer patients. If we want to take advantage of the tremendous opportunity offered by the Internet, it behooves us as doctors to find the best sites for our patients and direct them there. Which ones provide accurate and current information that’s easy to access and understand? Over the next few days, you and I will review some of the more popular health sites and rate them on the basis of such criteria.
One last thought before signing off. While I’m enthusiastic about the “democratization” of knowledge made possible by the Internet, I don’t want to suggest that every patient should feel obligated to know every facet of their disease, that they all have to become aggressive advocates for their care. As my father, also a dermatologist, often reminds me, there will always be patients who prefer to receive only what information a trusted doctor provides them with. They don’t want to know every possible side effect a medication can cause nor are they anxious to review every single treatment option available to them; they would rather let decisions be made for them. Our role as physicians is to recognize the differing needs of our patients and treat them accordingly. This is part of what my father would call the art of medicine. I’m glad that even in the age of molecular biology and cybermedicine, there’s still some art left in our profession.
See you on the Web,